HIV-infected women and their families:psychosocial support and related issues

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UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction

HIV-infected women and their families:

psychosocial support and related issues

A literature review

Department of Reproductive Health and Research

Family and Community Health World Health Organization

Geneva

WHO/RHR/03.07 WHO/HIV/2003.07

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HIV-infected women and their families: psychosocial support and related issues.

A literature review.

WHO/RHR/03.07 WHO/HIV/2003.07

© World Health Organization 2003

The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement.

The mention of specifi c companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.

The World Health Organization does not warrant that the information contained in this publication is complete and correct and shall not be liable for any damages incurred as a result of its use.

The views expressed in this document do not necessarily refl ect the stated policy of the World Health Organization.

To order a copy of this publication, please contact:

Department of Reproductive Health and Research, World Health Organization,

CH-1211 Geneva 27, Switzerland

Fax: 41-22-7914189 41-22-7914171

Tel: 41-22-7914447 41-22-7913346

E-mail: [email protected]

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Abbreviations

3TC Lamuvidine

AIDS Acquired immunodefi ciency syndrome ANC Antenatal care

ART Antiretroviral treatment ARV Antiretroviral

AZT Zidovudine (also ZDV)

HIV Human immunodefi ciency virus MTCT Mother-to-child transmission NGO Nongovernmental organization PETRA Perinatal transmission study PLHAs People living with HIV/AIDS

PMTCT Prevention of mother-to-child transmission RTI Reproductive tract infection

STD Sexually transmitted disease STI Sexually transmitted infection TB Tuberculosis

UNAIDS Joint United Nations Programme on HIV/AIDS UNFPA United Nations Population Fund

UNICEF United Nations Children’s Fund VCT Voluntary counselling and testing WHO World Health Organization ZDV Zidovudine

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Acknowledgements

This document was prepared by Elizabeth Lindsey on behalf of the Department of Re pro duc tive Health and Research.

The Department would like to thank Rachel Baggaley, Elizabeth Hoff, Eric Mouzin, Doreen Mulenga, Jeanette Olsson and Tin Tin Sint, who provided helpful comments and suggestions.

Special thanks are also due to Timothy Farley and Justin Mandala who co-ordinated the work on this document.

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1

Background

In April 2000, the Department of Reproductive Health and Research of the World Health Organiza- tion (WHO) commissioned a global review of the literature (emanating from academic institutions and United Nations agencies) on psychosocial support and counselling to HIV-infected pregnant women and their families. This review also collected information about practices and projects that care for HIV-infected women and their families throughout the world. The purpose of this review was: (i) to fi nd out what literature was available on psychosocial support and counselling to HIV- infected women and their families (from preconception until the child is two years old); and (ii) to learn what methods were being employed in existing projects to support and care for HIV-infected women and their families in relation to mother-to-child transmission (MTCT) of HIV during the perinatal period.

The specifi c terms of reference were:

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to review the literature on psychosocial support to women with a special focus on pregnant women with STIs/HIV/AIDS and summarize the lessons learnt;

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to examine the structure and effi cacy of programmes for the support of HIV-infected women and their families, and issues related to discrimination, abuse, exploitation and social injustice to pregnant women/mothers and their families;

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to collect, review and assess any work that is being undertaken by different United Nations agencies, donors, international/national nongovernmental organizations (NGOs) and professional groups such as psychologists, nurses/midwives, physicians, etc.;

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to synthesize and derive recommendations from the lessons learnt that would be useful for health care workers and community groups to support HIV-infected women and their families, not only during pregnancy and delivery but over the long term.

This review is divided into three sections. Section one provides a synthesis of the reviewed literature on prevention of mother-to-child transmission (PMTCT) of HIV, voluntary HIV testing and counselling (VCT), and other issues that impact on the care, psychosocial support and counselling needs of HIV-infected women and their families in the perinatal period. Section two provides examples from around the world of projects that focus on the care and support of women and families, with a focus on MTCT. The fi nal section contains recommendations on psychosocial support and counselling for HIV-infected women and families.

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Section One

Review of the Literature

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⁴ Psychosocial Support for HIV-infected Women and Families

O c c a s i o n a l P a p e r 7

Review of the Literature

Introduction

The acquired immunodefi ciency syndrome (AIDS) is a profound human tragedy and has been referred to as the “world’s most deadly undeclared war” (1). The human immunodefi ciency virus (HIV) and AIDS continue their devastating spread, affecting the lives of 16 000 people each day with women, babies and young people being increasingly targeted. According to the latest data from the Joint United Nations Programme on HIV/AIDS (UNAIDS) (2), there are now approximately 40 million people living with HIV/AIDS (PLHAs) worldwide, of whom 17.6 million are women and 2.7 million are children under the age of 15 years. This report also states that there is now compelling evidence that the trend in HIV infection will have a profound impact on future rates of infant, child and maternal mortality (2). In fact, MTCT of HIV is by far the largest source of HIV infection in children below the age of 15 years. In countries where blood products are regularly screened and clean syringes and needles are widely available, MTCT (also known as vertical transmission or perinatal transmission) is virtually the only source of HIV transmission in young people (3). A cumulative total of over 13 million children under the age of 15 years have lost their mother or both parents to AIDS (1). Though Africa accounts for only 10% of the world’s population, about 90% of all HIV-infected babies are born here, largely as a consequence of high fertility rates, combined with very high infection rates (3). However, the virus is now spreading fast in other regions of the world, and everywhere the proportion of women among those infected is growing.

AIDS threatens to reverse years of steady progress in child survival. In Harare, Zimbabwe, for example, between 1990 and 1996, AIDS caused infant mortality to double from 30 per 1000 to 60 per 1000; it is likely that this is also the case in other most affected regions of the world. Also, deaths among one-to-fi ve-year-olds, the age group in which the bulk of child AIDS deaths are concen- trated, rose from 8 per 1000 to 20 per 1000 in the same period (4).

These devastating statistics point to the need for therapeutic interventions for PLHAs including infected mothers and their infants. Considerable advances have been made in discovering new and varied types of short-course antiretroviral therapies (ART) and other medical interventions that have considerably reduced the transmission of HIV from mother to child (5). In various parts of the world, new and advanced antiretroviral (ARV) regimens and other forms of treatment, combined with no breastfeeding are reversing MTCT trends (4). However, these therapies are not available globally. Lack of an adequate health care infrastructure and fi nancial resources are the primary reasons why these therapies are not available to all those who need them (4).

Voluntary HIV testing and counselling (VCT) plays a vital role in preventing MTCT. The primary focus of VCT is on knowledge development and risk assessment in order to promote HIV testing.

If a person tests positive for HIV, then counselling focuses on behavioural change and supportive adherence counselling with therapeutic regimens. As one group of researchers states, VCT is “a tool in controlling the spread and effects of this disease” (6). 6). 6

Although VCT is vital in preventing MTCT, what about the psychosocial and emotional needs of women and families who test HIV positive? There is considerable evidence to suggest that people can only absorb and understand new and important health information through effective interper- sonal communication (7–10). This communication goes beyond the simple provision of information; it addresses the emotional, psychological and personal/social/legal needs of the persons being counselled. Issues of family violence, abuse, legal inequity, discrimination, stigma, poverty and others lead to vulnerability and oppression for HIV-infected women and their families. In addition, the emotional reaction to an HIV-positive diagnosis can be profound (11). New and important

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5 Review of the Literature

information related to the prevention and care of HIV/AIDS is diffi cult to absorb through a fi lter of emotional distress (12). Therefore, people need more than the provision of information to promote HIV testing, behavioural change and adherence; they also need considerable psychosocial support and emotional counselling in order to live effectively, adhere to therapeutic interventions and enhance their quality of life.

How the literature was searched

The keywords used to access literature included: HIV, AIDS, mother-to-child transmission, HIV pregnancy, HIV newborn/paediatrics, HIV counselling, HIV psychosocial support, HIV disclosure, HIV vertical transmission, perinatal HIV, HIV voluntary counselling and testing, HIV diagnosis, HIV interventions, HIV and violence, and HIV and women. The search engines used were psych info, CINHAL, Medline, Grateful med, Health star, Healthlink.org.UK, pubmed, dogpile and goog- le. In addition, literature was accessed from the WHO, UNAIDS, United Nations Children’s Fund (UNICEF), African Journal of Health, International Journal of STD and AIDS, and approximately 15 different HIV/AIDS internet web sites. Over 200 pieces of literature were accessed via these means and 151 are referred to in this report. Following the literature review, people and projects throughout the world were accessed via email, telephone and facsimile to learn about the various practices and services provided for HIV-infected women and their families related to the prevention of MTCT. There was correspondence with over 150 people for this purpose. Finally, people attending the 13th International AIDS Conference in Durban, South Africa, in July 2000 provided further details on services and projects related to psychosocial support and counselling.

Readers wishing to have more information on VCT, MTCT, orphans and recent reports on the global HIV/AIDS epidemic are referred to the following publications:

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Voluntary counselling and testing for HIV infection in antenatal care: practical considerations for implementation (13)

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Counselling and voluntary HIV testing for pregnant women in high HIV prevalence countries:

elements and issues (14)

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Report on the global HIV/AIDS epidemic 2001 (2)

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Children orphaned by AIDS: frontline responses from eastern and southern Africa (1)

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HIV/AIDS: emerging issues and challenges for women, young people, and infants, 2nd ed. (3)

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Prevention of HIV transmission from mother to child: strategic options (4)

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Fact sheets on HIV/AIDS for nurses and midwives (15)

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Source book on HIV counselling training (16)

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Counselling for HIV/AIDS: a key to caring (Counselling for HIV/AIDS: a key to caring (Counselling for HIV/AIDS: a key to caring 17)17)17

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HIV and infant feeding: guidelines for decision-makers (18)

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The impact of voluntary counselling and testing: a global review of the benefi ts and challeng- es (19)

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New data on the prevention of mother-to-child transmission of HIV and their policy implica- tions: conclusions and recommendations (20)

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Discussion paper on models for VCT for MTCT interventions in Eastern Europe (21)

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⁶ Psychosocial Support for HIV-infected Women and Families

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Women and vulnerability

The effect of the AIDS epidemic on women has changed considerably over the past decade (22).

Currently, women are at the centre of concern. WHO estimates that women account for almost half of all newly infected adults and, worldwide, there are 15.7 million women living with the HIV infection. Girls become infected at an earlier age than boys due to biological, sociocultural and economic factors. This rise in female infection rates also affects MTCT. Studies of women attending antenatal clinics fi nd that many women are monogamous and have been infected by their one partner, usually their husband (16). Sexual coercion of women, or the act of forcing or attempting 16). Sexual coercion of women, or the act of forcing or attempting 16 to force another individual through violence, threats and verbal insistence is found worldwide (23).

Violence against women is often socially tolerated and, in some contexts, forced sex with a spouse and wife beating are accepted or even expected expressions of masculinity (24,25). The most common form of violence against women is abuse by a male partner (26). 26). 26

Migration as a result of war, famine, political oppression or poverty can increase a woman’s vulnerability to HIV infection if she is isolated from community structures and support, and does not speak or read the local language. Female migrant workers, refugees or returnees are often more vulnerable than other women to some kind of sexual barter as they try to negotiate employment, necessary documentation or a place to live (22). In times of war, rape of women is widespread (27). 27). 27 Furthermore, according to UNAIDS (3), there are women from traditional families who are caught in a terrible bind of pressure to produce children while being unable to admit that they have con- tracted HIV from a husband who is unfaithful. There are teenage girls from very poor homes whose only way of staying at school is to barter sex with teachers or “sugar daddies” to pay for books, school uniforms and fees. Research confi rms that nonconsensual sex is pervasive in the lives of girls and women (3).

Infants born to HIV-infected mothers acquire the infection either through pregnancy, delivery or breastfeeding. Most of these mothers have no real choice because ARVs and other prophylactic measures are either unavailable to them, or they are unaware of their availability. Also, they are unaware of, or have no real choice about, safe and affordable replacement feeding alternatives for their babies. In addition, many women are afraid of drawing attention to their HIV status by not breastfeeding, and suffer in silence while putting their babies at risk because of the cruel stigma attached to AIDS.

Cultural practices such as female genital mutilation may also increase the risk of HIV transmission through tearing and other trauma during sexual intercourse. According to WHO, 130 million women worldwide are living with the consequences of this practice and an estimated two million young girls each year are at risk of being subjected to it. In addition, a large number of studies conducted in many countries and in all continents of the world, suggest that between one-third to one-half of all married women have been beaten or otherwise physically assaulted by their partners (13). In this sense, women are at high risk of suffering verbal, physical or sexual abuse (28). The most powerless and vulnerable are children and women coerced into the sex trade by traffi ckers. An estimated two million girls 5–15 years of age are coerced into the trade each year. Unfortunately, prostitution is often the only means of fi nancial security for women, but they rarely have the power to negotiate condom use.

Many women live in poverty, lack education and economic opportunities, and suffer subordination to men (3,29). In recent US studies, HIV-infected women were noted to be predominantly single parents, belonging to a racial minority group, and living in poverty in marginalized communi- ties with poor access to health care and other social, fi nancial and legal services (28,30). In many cultures there are social and cultural taboos about discussing sexuality. Consequently, women have inhibitions about seeking information on HIV or procuring condoms. Many women remain powerless and are afraid to request condom use with their partner as they fear a violent reaction or aban-

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donment by the man on whom they are entirely dependent for survival (16,19,31,32). In addition, women often have no right to inherit land and property, they have limited opportunities to run a business of their own and have limited access to health care. Thus, in some of the worst-affected countries, HIV-infected women outnumber infected men by as much as 16 to one in the younger age groups (3). This disproportionate risk for women has enormous social implications since they are the principal guardians of future generations and the caregivers and nurturers of society. Yet, women’s health and well-being have always received a low priority (3).

Some national laws reinforce women’s economic dependence on men, such as those restricting property ownership and inheritance. Also, in some cases, laws limit women’s ability to enter into independent contracts or obtain credit under their own names and impede their ability to control income and property. These practices reinforce women’s economic dependence on male relatives.

Laws regarding marriage, divorce and child custody can prevent women from leaving relationships in which they or their children are physically or sexually abused, or exposed to the risk of HIV infection (16). Succession rights need to be protected or revised in order to enable women to exercise 16). Succession rights need to be protected or revised in order to enable women to exercise 16 their rights and control their property, and children to inherit from their parents.

Women and young girls also suffer from biological vulnerability. Research shows that the risk of becoming infected with HIV during unprotected vaginal intercourse is as much as 2–4 times higher for women than men (15). Male-to-female transmission during vaginal intercourse is more effi - cient as women have a larger mucosal surface area exposed to their partner’s semen, which has a higher concentration of HIV than a woman’s vaginal secretions. In addition, women are also more vulnerable to other sexually transmitted infections (STIs) that multiply the risk of contracting HIV tenfold. Younger women are even more at risk as their immature cervix and scant vaginal secretions make them prone to vaginal mucosal lacerations. There is also evidence that women become more vulnerable to HIV infection again after the menopause. In addition, tearing and bleeding during intercourse, whether from rough sex, rape, or prior genital mutilation increase the risk of HIV infection, as does anal intercourse. [Anal intercourse is sometimes preferred to vaginal intercourse by those who want to preserve virginity and avoid the risk of pregnancy. However, anal intercourse often tears the delicate anal tissues and provides easy access to the virus (15).]

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People’s experiences of HIV/AIDS in developed and developing countries

The main modes of HIV transmission for people living in developed countries are from the male to male unprotected sexual intercourse and sharing HIV-contaminated needles and syringes during injecting drug use (31). However, the incidence of AIDS in women in these countries is increasing steadily through heterosexual exposure, i.e. from male partners. Most people living in developed countries have access to affordable or free health care, including various ARTs and treatments for opportunistic infections.

In contrast, in the developing world, 40% of women lack access to adequate antenatal care (ANC).

In sub-Saharan Africa, less than half of all births are attended by a professional health care pro- vider, with even lower levels being reported from individual African countries and some parts of Asia. Moreover, the proportion of people without access to any health care ranges from over 40%

in some parts of Latin America and Asia to nearly 80% in the poorest parts of Africa (3).

Reports from studies in Africa and the developed world indicate that even before the introduction of ART, the rates of MTCT in the European Collaborative study were lower than those of cohort studies in Africa (33,34). Variations in infection rates may be due to differences in viral strains or to other characteristics such as nutritional factors, types of prenatal care received, or the prevalence of other STIs (35).

In less developed countries ANC is limited, testing programmes for HIV are almost nonexistent, effective interventions for PMTCT remain unimplemented, and prevention of postnatal transmission of HIV through breast milk, without compromising infant nutrition, is a major dilemma (36). 36). 36 HIV/AIDS also has a disastrous effect on family economics. For example, in Côte d’Ivoire, when a family member has AIDS, the average income may fall by as much as 52–67%, while expenditure on health care can quadruple. In addition, food consumption has been found to drop by 41% (1).

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Stigma and discrimination

In reviewing the literature on stigma, Alonzo and Reynolds (37) contend that stigma represents a 37) contend that stigma represents a 37 construction of deviation from some ideal or expectation. Stigma is a powerfully discrediting and tainting social label that radically changes the way individuals view themselves, or how they are viewed by others. When individuals fail to meet societal expectations they become discredited and are rejected, which isolates them from themselves and others. These authors have developed a stigma scale that moves from considering oneself at risk of contracting HIV infection, to being diagnosed as positive for HIV, to the asymptomatic or latent period of living with the virus undetec- ted, to the manifest stage of symptomatic infection.

Most people living with HIV and AIDS suffer or fear stigmatization (21,31, 44). Studies from Af- rica (38–42) suggest that AIDS stigma is linked to people’s sense of sexual morality and their fear of breaking taboos (43). It is thought that the fear of stigma adversely infl uences women’s health- seeking practices (45–47). A “conspiracy of silence” (45–47). A “conspiracy of silence” (45–47 13) exists in which HIV/AIDS is seldom openly discussed, even in heavily affected areas. People do not want to admit that a fatal disease spread by behaviour branded as “immoral” could be rampaging through their community or their country (13). Unfortunately, in places where denial fl ourishes, people are most vulnerable to the silent spread of HIV. Discussions of sexual practices or use of illicit drugs are often taboo and associated with embarrassment, shame, guilt and rejection.

Cultural norms of silence regarding sexual practices, preferences and desires can be problematic (15). Rarely are people open about their HIV status and many people go untested for fear of the result. It is still common for women to be blamed for spreading STDs, including HIV, despite the fact that women are often infected by their husbands or partners, to whom they are entirely faithful.

Interventions to reduce HIV infection in MTCT, particularly the administration of ARV prophylaxis and avoidance of breastfeeding, make it virtually impossible for HIV-infected women to keep their infection a secret from their families and people in the wider community. Many women fear discrimination, violence and even murder if they are identifi ed as HIV infected, and thus are reluctant or completely unable to take advantage of interventions offered to protect their infants from infection (13).

The consequences of stigma and discrimination for HIV-infected people are profound. It is common for stigmatized people to repress their anger at being discriminated against, which often manifests as self-hatred and shame (37,48–50). In addition, stigma and discrimination can lead to compromised care (15). Fear of contagion, victim-blaming, lack of confi dentiality, and misinformation and negative attitudes about HIV signifi cantly limit a caregiver’s ability to provide effective, respectful and dignifi ed care to PLHAs and their families (28,51–54). Some documented negative behaviours by health care workers include:

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condemning a PLHAs as a “bad person”;

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considering women to be irresponsible for exposing their vulnerable fetuses to HIV;

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isolating or avoiding PLHAs because of embarrassment or not knowing how to deal with such people;

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refusing to treat or care for PLHAs;

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ignoring or refusing to discuss risky behaviours and HIV prevention; and

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inability or unwillingness to care for PLHAs and their families in a nonjudgemental, caring and supportive manner (13,15,21,55).

It has been suggested that people are more concerned about the social consequences of HIV—including issues of death, sex, misbehaviour (sin), blame, shame, rejection and stigma—than with the technical facts about HIV/AIDS (56).56).56

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Benefi ts and risks of disclosure

The benefi ts of disclosure of HIV status include: (i) increased knowledge about HIV/AIDS and its transmission (21,57); (ii) greater likelihood of adopting preventive measures and changing behav-21,57); (ii) greater likelihood of adopting preventive measures and changing behav-21,57 iour (using condoms, avoiding injecting drug abuse) (21,58); (iii) greater access to social, medical, psychological, fi nancial and legal support for PLHAs (13,21); (iv) increased provision of psychosocial support to PLHAs on the part of family and community members (15,21,59); and (v) positive infl uence by PLHAs on others who might fear disclosure (60).

The benefi ts of shared confi dentiality, i.e. disclosing one’s HIV-positive status to a strictly limited number of persons, such as care providers or partners include: (i) expanding and sharing the burden of helping PLHAs beyond professional care providers; (ii) providing care and support that is sensi- tive to the person’s cultural, traditional and social milieu; (iii) planning for future care including orphan care; (iv) enhancing the quality of life of PLHAs and their partners; and (v) enhancing the knowledge of HIV transmission and prevention (56). In relation to PMTCT, shared confi dentiality 56). In relation to PMTCT, shared confi dentiality 56 is considered benefi cial in order to prevent unwanted pregnancies and prevent the spread of HIV infection to uninfected partners. An additional benefi t is in assisting the HIV-infected woman to plan for her future and that of her partner and children (59), and to access and adhere to therapeutic regimens such as ART and replacement feeding for the infant. However, in most VCT services associated with MTCT interventions, the pregnant woman is seen alone. Even when the involvement of partners is encouraged, male attendance at ANC clinics and their willingness to be tested is very low (21).

The major problems associated with disclosure of HIV status are the fear of experiencing stigma and discrimination, and the associated problems of rejection, abandonment, violence, abuse, loss of custody of children and property, and ostracism (see the chapter on “Women and vulnerability”).

Over the past 15 years, notifi cation of partners’ HIV status has been a major public health strategy in HIV/AIDS prevention (61). There is wide consensus that partner notifi cation and contact tracing could be used under certain conditions to protect people at risk of HIV infection (62,63). People living with HIV are encouraged and supported to inform their sexual partners of their status. A diffi culty arises when the HIV-infected person is a woman who fears domestic violence and the partner to be notifi ed is the man she fears (58). Hence, the problems of violence, abuse, discrimination and abandonment against women following disclosure have broad policy, legal and ethical implications that require re-examination of current public health requirements of disclosure and partner notifi cation (21).

In a study in Baltimore, MD, USA (58), researchers interviewed care providers who counselled HIV-infected women. Forty-fi ve per cent of the providers reported having had female patients express fear of physical violence as a result of disclosure to their partners, while 56% had had patients express fear of emotional abuse, and 66% had had patients who feared abandonment.

While talking to women about disclosure, Moneyham et al. (64) found that women did not tell their children or anyone else about being HIV positive because they feared that their children would be stigmatized and isolated by their classmates and neighbours. Roberts’ (65) research arrived at similar conclusions.

In a study conducted in Nairobi, Kenya, Temmerman et al. (50) found that less than one-third of women living with HIV had informed their partners of their HIV status, and violence against HIV- positive women was common. Such violence included being chased away from their homes or being replaced by another wife and beatings; one woman was driven to suicide. In a similar study in Rwanda, Van der Straten et al. (23) found that women had suffered beatings and break-up of relationships. In contrast, in a West African study (66), more than half of the women undergoing 66), more than half of the women undergoing 66

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HIV testing stated that they wished to receive their test result in the presence of another person, namely their regular partner. A study in Zimbabwe (67) found that with enhanced counselling, 75% 67) found that with enhanced counselling, 75% 67 were able to disclose their HIV status to their partner/spouse. A Thai study found that 84% of the study participants had disclosed their HIV status to their partner while only 34% had disclosed it to family or friends (59). The reason for not disclosing to family or friends was reportedly a feeling of shame and fear of rejection and discrimination.

Sowell et al. (49) studied women’s disclosure patterns in Georgia, USA and found that 90% of women disclosed their HIV status to health care providers, while only 69% reported disclosing it to their sexual partners. According to Seigel and Krauss (68), deciding whom to tell about one’s HIV status entails trying to protect oneself from discrimination, assessing one’s fear of rejection, and avoiding people who might infl ict pain or pity. In an evaluation study in Uganda, Kaleeba et al. (69), found that 90% of people sampled—a rare high fi gure—had revealed their HIV status.

However, this study also reported that only 36% of the sample revealed their serostatus to a spouse or sexual partner. It should also be noted that in this evaluation study, 41% of the respondents had been widowed. A Tanzanian study (56) reported that people often chose to postpone the disclosure 56) reported that people often chose to postpone the disclosure 56 of their HIV status because they felt they did not deserve the blame associated with the disease, or that the family burden of the stigma should be avoided. This study also found that people mostly chose a confi dant of the same gender and generation. Reasons for these decisions included the desire to reduce the impact of moral judgement, and the near-prohibition of discussing sexuality across generations. In a Thai study (48), it was found that women who did not disclose their HIV status had higher levels of worry and feared family shame.

Although the emotional and physical ramifi cations of disclosure can be profound, Gielen et al. (57) 57) 57 found that women’s fears of disclosure did not necessarily refl ect their experiences when disclosure was made. The women in this study feared rejection, discrimination, public ignorance and violence, but reported somewhat different experiences when disclosure was made, i.e. emotional upset, acceptance and support, rejection and violence. Therefore, some of the women’s fears were actualized in this study while others were not. All the women in this study felt that it was better to limit the number of people who knew their status in order to protect their own privacy and that of the family.

Despite the considerable barriers to shared confi dentiality, one author raises the question of involving couples in PMTCT all the way from VCT through decisions on treatment and care (70), noting that “all arguments have been about mother–child transmission and not parent–child … we have ignored the role of the father” (p. 8-10). In fact, studies have shown that providing HIV counselling and testing to both partners together can lead to greater acceptance and less abuse and abandonment of HIV-infected women. Thus, involving the fathers and couple counselling, or shared confi dentiality, could promote the reduction of MTCT (5,21,70). However, questions must be raised about who should be responsible for partner notifi cation—the counsellor or the woman. Such questions are very complex and no clear guidelines can be laid down. Therefore, each circumstance must be as- sessed individually, and decisions made by both the counsellor and the HIV-infected woman, about whether disclosure should be made and, if so, by whom. Such negotiations will be complex and might require repeated counselling before the best solution is found.

In conclusion, although public health mandates, and many AIDS organizations support, the need for shared confi dentiality, decisions to disclose HIV status must be considered in light of the personal, social, psychological, fi nancial and legal ramifi cations of doing so. However, it should also be stressed that shared confi dentiality leads to better strategies for prevention, increased support from health and social service providers, and enhanced care and support from family and community members. It should also be noted that people’s fears of disclosure might not fully represent their experiences of sharing their HIV status with designated others. Further information on issues related to the benefi ts of disclosure, ethical partner counselling and issues of case reporting can be found in a document prepared by UNAIDS (71).

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Mother-to-child transmission of HIV and its prevention

Mother-to-child transmission (MTCT) of HIV, also known as vertical transmission and perinatal transmission, is responsible for about 1500 new HIV infections in infants daily. Transmission mainly occurs around the time of delivery, rarely during early pregnancy, with breastfeeding contributing substantially to the overall risk. The other risk factors for transmission include high maternal viral load, advanced maternal immune defi ciency, prolonged rupture of membranes and vaginal delivery (5).

In the absence of specifi c interventions the rate of MTCT varies from 15–20% in Europe and the USA to 25–40% in sub-Saharan Africa. The difference in MTCT rates is largely associated with the additional risk posed by infant feeding practices. In developing countries, breastfeeding is more common and usually practised for longer periods of time than in the industrialized world (4).

United Nations agencies recommend a four-pronged strategy to prevent MTCT of HIV. This includes: (i) the primary prevention of HIV infection among parents to be; (ii) the prevention of unwanted pregnancies (including safe abortion where permitted by law) in HIV-infected women;

and (iii) the prevention of HIV transmission from infected women to their infants and (iv) the treatment, care and support of infected and affected women, their infants and young children, partners and families. The best ways to prevent HIV infection in infants remain primary prevention of HIV infection and reduction of unwanted pregnancies among infected women.

The third prong of the strategy is based on the use of ARV prophylaxis, promotion of good obstetrical practices and safe infant feeding practices. In October 2000, WHO recommended: “The preven- tion of mother-to-child HIV transmission should be part of the minimum standard package of care for women who are known to be HIV-infected and their infants” (20).

A brief overview of interventions to reduce the risk of MTCT of HIV is given below. In addition, a comprehensive overview of evidence and policy implications of interventions to reduce the risk of MTCT of HIV was prepared for a Technical Consultation convened by WHO in October 2000 (available online at: http://www.who.int/reproductive-health/RTIs/MTCT/mtct_consultation_octo- ber_2000/index.htm).

ARVs in preventing MTCT of HIV

Several ARV regimens have been evaluated in randomized controlled clinical trials and shown to be effective, as determined by infant infection status. The effective ARV prophylaxis regimens included zidovudine (ZDV) alone, ZDV + lamivudine (3TC), and nevirapine. All regimens include an intrapartum component, with varying durations of antepartum and/or postpartum treatment. The most complex and expensive regimen includes antepartum/intrapartum/postpartum ZDV, while the simplest and cheapest includes single-dose intrapartum and postpartum nevirapine.

The effi cacy of short-course ZDV, ZDV + 3TC and nevirapine has been demonstrated even in breastfeeding populations. Long-term effi cacy as measured by infant infection status through 12–24 months has been demonstrated for short-course ZDV and nevirapine regimens, showing that the early reduction in HIV transmission is maintained despite continued exposure to HIV during breastfeeding.

Short-term safety and tolerance of the effective ARV prophylactic regimens have been demonstrated in all the randomized trials, while collection of long-term safety data is ongoing. Selection for pre-existing resistant viral populations or development of new mutations may occur with all ARV drugs or drug regimens that do not fully suppress viral replication. However, this is more likely to

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occur rapidly with drugs for which a single mutation is associated with the development of drug resistance; such drugs include 3TC (with and without concomitant ZDV treatment) and nevirapine.

Virus containing drug-resistant mutations decreases once ARV drug prophylaxis is discontinued and wild-type virus dominates.

In October 2000, the WHO Technical Consultation concluded that the benefi t of these drugs in reducing MTCT of HIV greatly outweighs any potential adverse effects of drug exposure and concerns related to development of drug resistance. Thus, the implementation of any of the ARV prophylaxis regimens shown to be effective in randomized clinical trials (ZDV, ZDV + 3TC, or nevirapine regimens) can be recommended for general implementation.

WHO (20) recommends:

The local choice for the antiretroviral prophylactic regimen to include in the standard pack- age of care should be determined by issues of feasibility, effi cacy and cost. Considerations that contribute to decisions regarding the composition of the standard prophylactic package include: proportion of women attending antenatal care; time of initiation of antenatal care;

frequency of antenatal visits; type of voluntary HIV testing and counselling available; logis- tics and acceptability of antiretroviral prophylaxis administration; and cost of drugs.

Safer obstetrical practice interventions

Vaginal delivery, compared with elective Caesarean section, presents a higher risk of transmission. Elective Caesarean section can reduce the rate of MTCT by up to 50%; however, its potential benefi t has to be balanced against the risks to the mother, for example, anaesthetic complications, postoperative infection and risk of obstetrical complication during a subsequent pregnancy. In most developing countries where resources are scarce, elective Caesarean section cannot be recommended as a routine intervention.

Rupture of membranes for over four hours is associated with an increased risk of MTCT. There- fore, avoidance of routine artifi cial rupture of membranes is an intervention to prevent MTCT. Vag- inal cleansing with chlorhexidine 0.25% is also an intervention that may reduce the risk of MTCT where membranes are ruptured for longer than four hours. As with all women in labour, the use of the partogram (72) will improve the management of labour and reduce the risk of its prolongation.

Being newly infected has been associated with an increased risk of MTCT. Therefore, during antenatal follow-up, all the interventions that reduce the risk of new infection could be benefi cial in preventing MTCT: promoting safer sex, providing early detection and appropriate treatment of STIs.

Although the evidence (for increasing the risk of MTCT) is limited, invasive obstetrical procedures such as chorionic villus sampling, amniocentesis or cordocentesis, and routine episiotomy should be avoided in HIV-infected women.

Low vitamin A levels have been associated with higher rates of MTCT and with higher levels of virus in breast milk (73). However, there is no evidence that vitamin A supplementation reduces the risk of transmission, but supplementation may provide other health benefi ts to the mother and baby.

The dilemma of infant feeding

Breastfeeding increases the overall risk of MTCT of HIV and in 1992, it was estimated that if a woman with established HIV infection breastfed, the additional risk of vertical transmission was between 7% and 21%. For women becoming infected during lactation, the risk was estimated to be between 16% and 42%. This highlights the importance of primary prevention of HIV acquisition in

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lactating women. Transmission of HIV through breast milk can take place at any time during lactation; however, the risk appears to be greatest during the fi rst months of infant life and persists as long as breastfeeding continues. The high viral load of early HIV infection has been associated with increased risk of MTCT through breast milk. The risk depends also on clinical factors (mastitis and nipple pathology), and may vary according to the pattern and duration of breastfeeding. There is evidence from one study that exclusive breastfeeding in the fi rst three months of life may carry a lower risk of HIV transmission than mixed feeding but this remains unconfi rmed by other studies (20).

In developed countries, replacement feeding has been integrated with few problems into interventions to reduce MTCT. In developing countries, there are two main considerations: (i) exclusive breastfeeding is the best form of feeding for the infant during the fi rst six months of life and helps protect the mother against another pregnancy; and (ii) replacement feeding carries an increased risk of infant morbidity and mortality associated with malnutrition and infections other than HIV. In addition, replacement feeding in areas where breastfeeding is the norm gives a very public display of the woman’s HIV status to the community (4).

In most developing countries, policy-makers are facing a dilemma. WHO (20) recommends:

(i) When replacement feeding is acceptable, feasible, affordable, sustainable and safe, avoid- ance of all breastfeeding by HIV-infected mothers is recommended; otherwise, exclusive breastfeeding is recommended during the fi rst months of life. (ii) To minimize HIV transmis- sion risk, breastfeeding should be discontinued as soon as feasible, taking into account local circumstances, the individual woman’s situation and the risks of replacement feeding (includ- ing infections other than HIV and malnutrition). (iii) When HIV-infected mothers choose not to breastfeed from birth or stop breastfeeding later, they should be provided with specifi c guid- ance and support for at least the fi rst two years of the child’s life to ensure adequate replace- ment feeding. Programmes should strive to improve conditions that will make replacement feeding safer for HIV-infected mothers and families.

There are concerns about the cessation of breastfeeding; indirect evidence of the risk of HIV transmission through mixed feeding suggests that keeping the period of transition as short as possible may reduce the risk. WHO (20) recommends:

HIV-infected mothers who breastfeed should be provided with specifi c guidance and support when they cease breastfeeding to avoid harmful nutritional and psychological consequences and to maintain breast health.

For mothers not infected with HIV or of unknown HIV-infection status, WHO recommends exclusive breastfeeding for the fi rst six months of life.

Implementing programmes to prevent MTCT is a complex issue. Considerable experience has been obtained in launching pilot programmes with the support of governments, UN agencies (UNICEF, UNFPA, WHO and UNAIDS Secretariat), bilateral cooperations and NGOs. Scaling up these interventions to cover a wider segment of the population and ensuring their sustainability present formidable challenges. The experiences of Brazil and Thailand, which have been implementing national MTCT-prevention programmes, are important examples for other countries.

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Voluntary HIV testing and counselling

In order to incorporate PMTCT into existing health care services, it is essential to know the HIV status of the woman (and preferably her partner). The overall goals of VCT are: (i) to prevent HIV transmission; (ii) to prevent HIV acquisition; (iii) to provide early and appropriate uptake of services for people testing positive; (iv) to provide emotional care, family planning advice and enhanced coping strategies for those testing seropositive; (v) to provide social benefi ts; and (vi) to counsel PLHA to support adherence to treatment and prevention therapies and to cope with any adverse effects (19).

Potential benefi ts of VCT for different populations in reproductive health (i) Potential benefi ts for women and men

Voluntary HIV testing and counselling can help women and men who may be considering forming or expanding their families to:

•

weigh up the risks and advantages of a pregnancy;

•

make choices about contraception;

•

make choices about preventing future HIV infection, including condom use.

(ii) Potential benefi ts for pregnant women

Counselling a woman after a negative test can help her:negative test can help her:negative test

•

understand and maintain safe behaviour to avoid future infection;

•

understand the window period and undertake a second test while preventing future HIV infection;

•

breastfeed for optimum health of the infant.

Counselling a woman following a positive test result can help her:

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decide whether to share her HIV status with anyone and, if so, with whom;

•

choose to continue or terminate the pregnancy, where it is safe and legal;

•

learn more about HIV infection and its implications for her health;

•

seek early appropriate medical care for HIV-related conditions, e.g. tuberculosis;

•

choose ARV therapy where it is available and affordable;

•

join the continuum of care such as referral for specialist medical help, or to NGOs for ongoing HIV care and emotional and social support;

•

access support groups and health services that promote positive living;

•

make choices about sexual behaviour and future fertility;

•

understand infant feeding options, and choose what is best in her circumstances;

•

seek diagnosis, treatment and follow-up for her infant.

(iii) Potential benefi ts for partners of pregnant women

Counselling and voluntary testing of partners of pregnant women helps couples:

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support one another in decisions about care and infant feeding;

•

make decisions about future fertility;

•

choose behaviours that reduce the risk of contracting or spreading HIV.

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(iv) Potential benefi ts for the wider community

Widespread availability and use of VCT for HIV in a community can:

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reduce fear, ignorance and stigma surrounding HIV;

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stimulate a community response in support of those needing care;

•

contribute to an environment supportive of safer sexual behaviour;

•

encourage breastfeeding (and reduce the spill-over of artifi cial feeding) for HIV-negative mothers.

Thus, VCT addresses three key issues:

•

preventing transmission through the provision of information, and engaging in a shared problem-solving approach on the constraints people face in practising safe behaviours;

•

improving clients’ quality of life through exploration of their psychosocial and mental health issues;

•

sustaining treatment adherence through shared problem-solving on constraints to treatment maintenance.

Treatment adherence includes medication compliance, follow-up attendance, referral to other agencies and acting on specifi c counselling issues and advice. As a result, VCT is seen as a tool for the prevention of HIV transmission by increasing knowledge, promoting behavioural change and reducing risk behaviours (6). 6). 6

The minimal requirements for VCT associated with MTCT interventions (21) are: (i) informed consent including the right to opt out or refuse testing; (ii) confi dentiality, with special consideration being given to issues of partner notifi cation (see the chapter on “Benefi ts and problems of disclosure”) and shared confi dentiality with health care staff (see the chapter on “Stigma and discrimination”); (iii) legislation to prevent discrimination; and (iv) quality control. As the primary purpose of VCT is to encourage informed decision-making and behavioural change, it is important that individuals (and couples, if appropriate) have ready access to the relevant services, including: family planning for those women and couples wishing to avoid or postpone pregnancy, or practice safe sex during pregnancy and lactation; abortion services, if legal, for those who choose to terminate a pregnancy; mother and child health and other health care and support services for HIV-infected people (3,21). These services are more widely available in specialized HIV/AIDS centres and antenatal, maternity and health care settings in the industrialized world (74). However, currently VCT and PMTCT services and facilities are scarce in developing countries, where 95% of MTCT infections occur (3,14). As a result, UNAIDS suggests that it is not necessary to wait until the full range of services is available before integrating HIV-related information, counselling and voluntary HIV testing into routine pregnancy care. At the very least, women can be provided with information about reducing exposure to HIV infection for themselves and their partners, and avoiding unwanted pregnancies. Health professionals can also ensure services and practices before and during delivery that minimize the child’s exposure to HIV infection. Pre-test information and counselling and post- test counselling related to PMTCT will differ according to the needs of the client.

Pre- and post-test counselling

(i) Pre-test counselling

The primary purposes of pre-test counselling for pregnant women are: (i) to provide information about sexual transmission of HIV and how to prevent it; (ii) to discuss issues related to HIV transmission from mother to child and possible interventions; (iii) to provide information about the HIV-testing process; (iv) to discuss confi dentiality, and the possibility of shared confi dentiality

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and couple counselling; (v) to discuss the implications of a negative test, including promotion of breastfeeding; (vi) to discuss the implications of a positive test, including the costs and benefi ts of available interventions, issues related to the woman and the child’s survival; (vii) to consider possible exposure to stigma; and (viii) to undertake risk assessment.. Many women and their partners will never have considered testing, and some will have very limited knowledge or misinformation about HIV/AIDS. In these situations, it is likely that the quality of the information and counselling provided to women (and their partners) will have a bearing on whether they choose to be tested.

Much of the information in pre-test counselling is straightforward and can be given in groups (14,60,66). Individual counselling is then important to help women (and partners) assess their own 14,60,66). Individual counselling is then important to help women (and partners) assess their own 14,60,66 level of risk and consider the implications of a positive or negative result before deciding whether to be tested or not.

(ii) Post-test counselling

Post-test information and counselling is very different, depending on the HIV test result. For non-infected women (and possibly their partners), post-test counselling provides information on prevention of future infections; the potential risk of the window period, during which the woman is infected but the test is not yet positive; the high risk of HIV transmission from a newly HIV- infected woman to an infant during pregnancy and breastfeeding (due to high viral load); and the importance of sustained and exclusive breastfeeding for infant health. It should not be assumed that a negative test will be devoid of emotional reactions; further counselling could well be required.

P ost-test counselling should include information about: (i) the PMTCT package, access to care and related costs; (ii) infant feeding options, including the health benefi ts and risks of breastfeeding, costs of replacement feeding, exposure to stigma, and the need for contraception; (iii) future pregnancies; (iv) the prevention of HIV transmission to uninfected sexual partners; (v) shared confi dentiality; and (vi) referral for support, additional services and positive living. Unlike pre-test counselling, post-test counselling must be done in private with the concerned individuals or couples.

For readers who would like additional information on VCT, the documents Counselling and volun- tary HIV testing for pregnant women in high HIV prevalence countries: elements and issues (14), Voluntary counselling and testing for HIV infection in antenatal care: practical considerations for implementation (13), Discussion paper on models for VCT for MTCT interventions in Eastern Europe (21) and Tools for evaluating HIV voluntary counselling and testing (75) provide excellent overviews of the important elements to consider in pre- and post-test counselling.

Four models for VCT are presented here followed by a summary of the benefi ts of information, counselling and voluntary testing for different clients in reproductive health settings. This is followed by the potential downside of HIV testing. Finally, the minimum conditions for providing VCT in antenatal settings are addressed.

Models of VCT

There are several models of VCT in operation in various parts of the world (21), of which six are described below.

(i) Individual pre- and post-test counselling

This is known as the classic model of pre-and post-test counselling with follow-up counselling for those requiring further support. This classic model has been adopted by the majority of free-stand- ing VCT sites and is known as the “gold standard”. This model includes individual counselling for personal risk assessment in order to make an informed decision regarding testing and consider a

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risk reduction plan. Ongoing individual counselling, preferably with the same counsellor, provides coping support following testing and help in exploring options for follow-up care and support, sexual behaviour change and involvement of the partner or family. However, this model is very time-consuming and therefore unrealistic in many MTCT settings where health workers are expected to include VCT in routine antenatal care.

(ii) Group information, opt-in individual pre-test counselling, individual post-test counselling This VCT model has been widely used in MTCT projects. Group information is provided in pre- test counselling. Such information can be given in ANC waiting rooms where health educators and counsellors share information on HIV and MTCT. Women are encouraged to ask questions and to explore issues related to VCT and MTCT. Following group pre-test information/education, women can chose to “opt in” for a shortened version of individual pre-test counselling. Individual post-test counselling is then provided to all women who chose to be tested.

Although this model has been acceptable in many ANC settings, particularly where there is some prior knowledge and understanding of HIV/AIDS and MTCT, in areas where there is less knowledge, the uptake of this “opt in” option has been reported to be low. In addition, it has been noted in some settings that the views of particularly vocal members can persuade the group to either choose testing or refuse it. It is therefore important that the counsellor or educator be trained in group facilitation and in managing group dynamics.

It is also important to ensure that post-test counselling and continued support be available for those who test both seropositive and seronegative. Such support should be provided by referral to counselling services and/or post-test support or peer support groups.

This “opt in” model focuses on counselling and testing of pregnant women only. Involving partners in VCT/MTCT has been shown to be diffi cult, often resulting in low levels of disclosure. How- ever, involving men in MTCT decision-making could be benefi cial in promoting sexual behaviour change and reducing HIV transmission (76). 76). 76

(iii) Group information, opt-out individual testing, individual post-test counselling for HIV-infected women, women tested seronegative are informed of their negative status

This model has been used in many low-prevalence countries. Women are usually given a leafl et explaining the benefi ts and rationale for HIV testing and that they will be tested as part of routine antenatal screening. This leafl et also explains that women can opt out of testing, should they so wish. Women who test seronegative are informed of their result, while those who test seropositive are provided with post-test counselling and ongoing support and referral to other counselling services. This ongoing support includes offering ARV treatment, information on infant feeding options, education on other preventive measures and follow-up support, and treatment for the mother and infant, and testing for the infant.

The advantages of this model are that in low-prevalence countries, counselling can be focused solely on the women who test seropositive. Therefore, the number of health care workers who are trained in HIV/MTCT counselling need be fewer. However, this model depends on the availability of treatment and support for all HIV-infected women and their infants. If these services are unavailable or inadequate, then women and their infants will be at a disadvantage by this model. In addition, this model provides little opportunity for partner involvement in testing, treatment and ongoing management and support. Finally, women with limited levels of literacy, those with language barriers or poor understanding of HIV may not understand about the opting-out process or feel intimidated about doing so.

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(iv) Shared confi dentiality model: group information, opt-in couple/family pre-test counselling and individual/couple/family post-test counselling

This model is an enhanced version of model (ii) where women are encouraged to attend ANC with their husband/partner, a supportive friend, or trusted family member. This model has considerable benefi ts as it has been shown that HIV-infected people cope better, are in a better fi nancial position to access proper nutrition and treatment, and are better supported if they share their diagnosis with a trusted person. In addition, blame can be avoided and sexual behavioural change can be promoted if the couple is tested together. However, this shared confi dentiality must always be voluntary and women must be provided with the opportunity to be tested individually and have post-test individual counselling, should they so wish (see the chapter on “Benefi ts and risks of disclosure”).

Models of support, training and evaluation in resource-poor settings

There are a few examples of models for support and training in resource-poor, high-demand rural settings. These examples include: Taso Uganda: the inside story; Knowledge is power: voluntary HIV counselling and testing in Uganda UNAIDS Case study (60); The evaluation of HIV/AIDS training program (77); 77); 77 Counselling pregnant women and new mothers about HIV (Counselling pregnant women and new mothers about HIV (Counselling pregnant women and new mothers about HIV 78), Tools for evaluating HIV voluntary counselling and testing (75).

Challenges in HIV testing

Where interventions for PMTCT are unavailable or too expensive, women (and possibly their partners) may decide that there are limited benefi ts to testing. Where breastfeeding is universal and privacy is limited, it may be impossible for the HIV-infected woman to choose alternatives to breastfeeding without publicly displaying her HIV status to her family and the community. The woman might risk ostracism, abandonment, divorce or abuse as a result of her public disclosure of her HIV status. In addition, it is possible that breast-milk substitutes are too expensive for the family to afford (14). Sherr (79) also noted that the psychological impact of a positive test result might be so severe as to be harmful to the woman and her family. Therefore, it is possible that people might consider the psychological impact of a positive test result, the risk of disclosure and the costs of interventions to outweigh the benefi ts of knowing their HIV status. It is therefore important that counsellors provide adequate and accurate information to their clients about both the benefi ts and downside of HIV testing in PMTCT.

Minimum conditions for providing VCT in antenatal settings

(i) Acceptable, accessible and affordable services

For VCT services to be acceptable to women there must be clearly defi ned protocols in confi - dentiality and information management. In addition, the woman (and her partner) must feel that they have made their own decision about testing without coercion or even well-meaning pressure.

Therefore, informed consent must form the basis for the woman’s individual decision. VCT should be integrated into ANC services so that it is indistinguishable from attendance at ANC. The staff should be friendly and nonjudgemental, and the woman should be assured that continuing counselling would be available to her. The distance from home to the VCT/ANC services should not be too great, and transportation should be assured. Opening hours need to correspond with women’s many other tasks and duties. Services should also provide for the inclusion of partners, family members and/or friends attending VCT with the pregnant woman, where appropriate. Finally, services should be affordable and should be provided free or at low cost.

HIV-infected women and their families:psychosocial support and related issues

UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction